Tough Choices for Parents of Adults With Bipolar Disorder
Dilemmas faced by parents of bipolar adults who do not seek help.
Posted July 30, 2016 | Reviewed by Lybi Ma
It’s never easy for parents to receive news that their adolescent child has been diagnosed with a serious psychiatric disorder. Usually, when the diagnosis involves bipolar disorder it follows a period of mood intensity that has brought attention to the child’s mental health issues. Sometimes the initial diagnosis occurs during the course of a first psychiatric hospitalization in response to acute elevation or depressive symptoms accompanied by suicidal ideation.
While the news is always unwelcome, it’s often met with strong parental concerns and follow-up treatment planning. The bipolar adolescent typically receives psychiatric medication, psychotherapy, and encouragement towards lifestyle modification—at least to the extent that he or she is willing to go along with it.
By the time the adolescent is 17 years old, the situation is quite different from the child being brought to the pediatrician without agency or cooperation. Some extent of buy-in or compliance is needed for the adolescent to obtain the help that’s needed.
But as the newly diagnosed adolescent grows older, there’s no guarantee of continued treatment compliance, especially when considering issues such as social stigma or medication side effects. By the mid-20s or beyond, we see that parents of adults with bipolar disorder are faced with enormous dilemmas when the adult child’s rejection of treatment takes them towards recurrent instability and progressively worsening psychiatric symptoms.
What can the parent do when the adult child remains in denial or perhaps is even incapable of recognizing that he or she struggles with a psychiatric disorder? The following vignettes represent two very different sets of responses to the parental dilemma:
Judith, a divorced mother of a 26-year-old daughter with bipolar I disorder, consulted with me to discuss concerns about what to do in relation to her daughter’s failure to manage her life independently. She described a situation where Trisha was living at home and had been diagnosed with bipolar I disorder in her sophomore year at a well-known art institute. She took a medical withdrawal and returned home with the intent of stabilizing and returning to school. Three months into her recovery she discontinued her medications due to the emotional flatness she experienced from her mood stabilizer/antipsychotic medication combination. Trisha felt it was imperative that she live life to its fullest without feeling limited or compromised by her medication.
This attitude was not surprising to Judith, as she had always known her daughter to rebel against conformity and to reach towards the intensity of self-expression. Over the next couple of years, Trisha experienced a fair amount of rapid cycling. She had two additional hospitalizations and a 5-day stay at a non-medical crisis stabilization facility. With both hospitalizations, she agreed to start medication while hospitalized but she promptly discontinued her prescriptions shortly after discharge. She remained insistent that there was nothing inherently wrong with her intensity. From her perspective, the problem mostly reflected societal rigidity—people’s anxious discomfort in response to a female who was blue-haired, tattooed, pierced, and filled with energetic intensity.
Trisha could not hold down a job nor could she sufficiently organize her efforts towards completion of her degree. She was always in the midst of some new art project, which typically occupied the middle of Judith’s living room with whatever material she was working with. Judith had repeatedly encouraged Trisha to remain compliant with her medication treatment, to no avail. Non-pharmaceutical interventions such as trying to help her stabilize sleep patterns were thwarted due to Trisha’s insistence that she remain awake as long as her energy continued to fuel her creative endeavors. Trisha was convinced that what professionals labeled as bipolar illness was simply the manifestation of her artistic temperament.
Judith explains that she is tired of organizing her life around her daughter’s dysfunction. She’s not comfortable having guests over. She doesn’t travel and risk leaving her daughter alone. She doesn’t even date as she anticipates that most potential partners would not be willing to put up with the disruption that accompanies Trisha’s lifestyle. On the other hand, she’s fearful that her daughter will become homeless if not provided with the resources that she’s been unable to provide for herself. Judith is aware that her choice to support and maintain her daughter’s lifestyle may serve to delay change. She’s also concerned that the outcome of setting firm limits and conveying clear expectations around treatment compliance may end up with Trisha’s leaving home in her quest to be the artist she is meant to be.
Judith conveys that for now, she is willing to continue to provide the support while also hoping that her daughter will eventually mature enough to recognize the absence of ongoing treatment and her accompanying lifestyle will not likely result in improved functioning.
Betty and John sought help because of their 35-year-old son, Steve, diagnosed with BP II and substance abuse disorder. He had one hospitalization in his late 20s following an extended period of hypomania involving impulsivity, impaired judgment, high-risk behaviors, and aggression, all of which were fueled by frequent cocaine intoxication. Since that time Steve has been in and out of therapy but has mostly remained out of therapy.
The same holds true for his psychiatric medication treatment. Steve lives in a small apartment above Betty and John’s separate garage. He’s employed as a carpenter and his work history is spotty as it fluctuates commensurate with his variable functioning. He left college after his third year due to poor academic performance.
Betty and John convey that Steve readily admits he hates the reality of his diagnosis. It brings a strong sense of shame and limitation. He’s able to function well enough when his mood is in mid-range or even mildly elevated. His overall attitude is that he’ll make the best of his good times, and try to ride out the bad ones. Ultimately, he finds this preferable than trying to fit into a more traditional societal role and the lifestyle that comes with it.
This would possibly be a viable choice if Steve were self-sufficient. But he comes in and out of John and Betty’s home to get food and to borrow or use other home goods. When he’s working and functioning more effectively, they see less of him as he’s more able to provide for himself. But when his mood is unstable he becomes less consistent with work and more reliant upon parents. He can also become easily argumentative and volatile when his mood state is complicated by accompanying substance use.
John and Betty have tried to set firmer limits and to encourage that Steve remain treatment compliant. But if their limit setting is attempted when he is very unstable, then his anger becomes frightening to them and they are not able to be consistent with established limits. Essentially they feel held hostage by Steve’s resistance to his diagnosis, his volatility, limited capacity to sustain employment, and his recurrent substance use. Like Judith, they are also fearful of what will happen to Steve if they become less supportive and more effective with limit-setting. Unlike Judith, they are ready to initiate change, even if the short-term outcome is worse than what they’re currently faced with. They want their lives back and they want to see some change in Steve’s maladaptive choices.
The two vignettes are real though some facts have been altered. The painful reality is that they are not that uncommon. There are many people with bipolar illness who make healthy choices. But there are many others whose stories have a similar feel to what’s portrayed in the two vignettes. The heartbreak and the dilemmas faced by parents of adults with untreated mental illness are real. Where are the choices for parents, particularly those that don’t also carry substantial risk?
The answers are as varied as the situations that give rise to the questions. However, there are two factors that are essential to try to get a handle on before arriving at the range of options to be considered. They are:
- What is the adult child capable of with regard to his or her functional stability?
- To what extent is the individual able to draw on internal resources involving insight, self-awareness, and capacity to accurately perceive the impact of their illness to help manage the mood intensity seen in more acute cases of bipolar disorder? I’ll also point out that while these represent two different questions, they are ultimately intertwined.
With regard to question number 1, if the adult child has never been in treatment voluntarily, having never tried to sustain some semblance of reasonable societal functioning, then the answer is hard to determine with certainty. However, if the adult child has previously had one or more periods of sustained stability, especially concurrent with good mental health treatment, then parents can at least have a sense of what’s possible. One caveat here would be if the period of good functioning occurred long ago.
Sometimes with more acute bipolar disorder, we see a gradual decline in functioning over the years. Thus, if the adult child is in his late 30s and the high functioning mark was at age 23, then the life picture from 15 years ago may not be a valid appraisal of contemporary functional capacity.
But let’s assume that’s not the case. Imagine, as we saw with Steve, that the individual has progressed in and out of periods of stability. That’s quite different. The upper level of functional capacity is already evident. The question is more: What should one have in place to maintain reasonable stability? With bipolar disorder, especially where the broad course of symptoms evidences a fair degree of acuity, this usually requires a combination of medication compliance and commitment to healthy living.
When it is apparent that an adult child is capable of healthier, more autonomous functioning but prefers to make life choices that don’t optimize his or her stability, then that’s where parents need to look at the role they may play in enabling their child’s dependency.
It didn’t take much time into the first session with John and Betty before they both acknowledged that they had known for quite some time that they were partly responsible for the perpetuation of Steve’s minimally functional status. Their reasons were what you’d expect: worry, fear, guilt, wishful thinking, not wanting to push their son away, all the complicated pieces of loving an adult child with bipolar disorder.
The plan we arrived at, John and Betty were going to work on outlining a concrete set of expectations for their son Steve. They were to put these in writing along with specific consequences he would face if he were not compliant with expectations. The plan would be gradually initiated and allow room for some flexibility. But the bottom line: If Steve was not willing to go along with the plan and if he could not provide evidence of compliance and improvement, he would not be allowed to remain on their property or to continue to be financially assisted by them.
The plan also entailed Steve’s resuming treatment. Once a therapist and psychiatrist were found, the overall plan would be shared with both providers. A release would be signed providing permission for either provider to notify parents if Steve was missing sessions, if he discontinued his sessions, if he discontinued medication, and/or if he relapsed with substance abuse. They were going to give him six weeks in which to put various pieces of the “Wellness Plan” together. If he did not follow through, they would begin necessary legal proceedings to have him removed from their property. It was also recommended that they consult with an attorney who specialized in law related to tenant management.
I agreed to meet with John and Betty a few more times to help them become clearer about expectations and consequences. I also agreed to help them locate a family therapist who would agree to meet with them and their son. It was important that the therapist doing the family work not have any prior alliance with the parents as I did not want Steve to feel “ganged-up on” any more than he would already feel when hearing the strategic shift being conveyed to him by his parents.
The important work they were all faced with entailed moving away from previous patterns of enabling and dependency while progressing towards a position reflecting self-care, self-sufficiency, and responsibility for self. A side-note: I like to think of the relevance and applicability of the word “response-ability.”
And what about Trisha? How should the same themes be applied to her situation?
Before discussing her case there is a relevant concept that warrants our attention, Anosognosia. The National Alliance of the Mentally Ill (NAMI) definition: “When someone is unaware of their own mental health condition or that they can't perceive their condition accurately.” The Treatment Advocacy Center definition: “Anosognosia is a common symptom of schizophrenia and bipolar disorder with psychotic features. Also called 'lack of awareness' or 'lack of insight,' it has an anatomical basis that has been confirmed in multiple scientific studies. The word itself comes from the Greek word for disease (nosos) and knowledge (gnosis) and literally means “to not know a disease.” It affects approximately 50 percent of individuals with schizophrenia and 40 percent of individuals with bipolar disorder and is the most common reason that individuals with schizophrenia and bipolar do not take their medications. When taking medications, awareness of illness improves in some patients.”
This issue speaks to the second question being considered when trying to arrive at appropriate expectations in relation to an adult child with bipolar disorder: What internal resources involving insight, self-awareness, and capacity to accurately perceive the impact of their illness is the individual able to draw on to help manage the mood intensity seen in the more complex cases of bipolar disorder?
With Trisha, there’s been no evidence that she’s able to accurately self-perceive. From her perspective, the bipolar diagnosis reflects the misjudgment of health professionals as well as her mother’s excessive concern and the imposition of norms that are incongruent with Trisha’s identity. She doesn’t come in and out of accurate self-appraisal. Instead, her perception of self represents an identity that doesn’t incorporate any degree of illness or psychopathology.
A key distinction between Trisha and Steve is that she’s not trying to deny something that’s too painful to accept. Based on Judith’s report it seems more like Trisha can’t accurately perceive her bipolar illness, its detrimental impact on her as well as any recognition of the need for treatment. Her anosognosia likely reflects some degree of brain dysfunction where communication between neural networks essential to self-observation is not occurring as it should.
In a session with Judith, it was apparent that she had done enough of her own research to understand the limitations her daughter was facing. She had even read about the effects and limitations that accompanied anosognosia. Judith was fearful that a plan similar to the one established for John and Betty would indeed assign her daughter to life in the streets and evenings in shelters or worse. Judith was fully aware of the sacrifice she was making by electing to provide for her daughter. She didn’t like the reality that her primary role in life was that of a caretaker. On the other hand, she was accepting of the fact that without her supportive presence, her daughter would face numerous challenges that she might not be capable of managing.
As I concluded my consult with Judith she said, “So I guess you don’t have any magic answers, do you? Maybe what I was looking for was someone who would just listen, and appreciate the dilemma I face.” I acknowledged the strength of her love and commitment.
The broadly identified circumstances faced by parents of Trisha and Steve don’t look all that different. But as we get up close we see some very distinct differences in how they’re each affected by their bipolar illness. My calculation was that Steve had more potential for improvement than he was actualizing, in part because he had previously demonstrated as much. Trisha, on the other hand, had not shown periods of more accurate self-observation. In fact, her incapacity to see her bipolarity was one of the most limiting aspects of how the illness affected her.
If we imagine that Judith had been someone different, someone who placed greater emphasis upon personal fulfillment in her own life, then we might see a mother taking a very different position in response to her daughter’s bipolarity. It wouldn’t be a wrong choice, nor would it reflect any less love or concern for her daughter. It would simply be another option, somewhat less selfless, on the continuum of choices that people face when loving and caring for those with bipolar disorder.